Good Morning All -
OK - I am blown up like a balloon!! I guess the party on Sat is catching up to me. My eyelids, face, neck, fingers, ankles shins - everything!! I can barely bend anything and my lower legs really hurt to touch. I am going to reiterate what I said a while ago, that I really think this is a circulation problem...My brain even feels as it if has air bubbles in it, and one wrong move and they will pop!!!
I see the rheumie today for my first follow-up since Dx...Today could be Imuran day...uughhh...Im afraid, I really am...I dont want to get sick (nasuea and vomiting sick). Ive had enough sick for a lifetime, thankyou very much...
Oh, keep me in your prayers please. you know what I just thought of? I have YET to have a urinanlysis...I wonder if I should get one today...maybe my kidneys are causing the swelling? Ive had problems with the kidneys before...
I woudl also like to say for the record....I - in NO WAY - want to encourage anyone to leave out symptoms at their doctor appts...I have found in my own reading (including the LUpus Book) and my own experiences that sometimes, when we get into see the doc (particularly for the first time), we start reeling off symptoms and MANY docs respond poorly to this due to 1) Lack of knowledge of the many symptoms of SLE and its presentation over a period of years and 2) training. However, it would be irresponsible of me to say to NOT TELL of your symptoms. Docs need to know, and good docs will do the responsible thing and take it all into consideration. I do not want to send the wrong message in any way!!
So, I go today - wish me luck...TTyl..
Love Lauri

cheryl_v

07-28-2008, 09:39 AM

Poor Lauri, you must be so miserable. I'm glad you have the app today, sounds like you need to be seen. Also sounds like your body and meds haven't caught up to each other from the 3 days of no meds. I understand what you ment: you want them to understand, not overwhelmed and shut down on you. At least thats how I took it. Let us know how it goes. Hope you get some relief soon :D .

laurid8967

07-28-2008, 01:17 PM

Well....Im not sure how the appt went...The doc didnt seem concerned at all about the swelling and even said that it wasnt fluid. I told him I havent been able to pee either, and it went unacknowledged. I was a little disappointed, to be honest, and I really do like this doc...Oh well, if the swelling and weird sensations continue, I will call my regular doc. I KNOW that something isnt right, and my days of ignoring symptoms are OVER!!!
My appt went pretty well otherwise, no chemo for now (YEAH!!). He said he wants to give the plaquenil more time to work first. I am to start tapering on the prednisone as well, down to 15mg from 20. He said to do this for 2 weeks, UNLESS symptoms flare up again. If so, call him right away. He is going on vaca for part of August, so if he's not there, to go back up to 20mg again. I see him again in 4 weeks, and if I cant get below 20mg, then well talk about Imuran. I am grateful he's not doing this right away. I just really wish the predinsone wasnt so bad for us!! And, to be honest, I dont think Im going to be able to come down from 20 mg. Im having flares ON the 20mg!! But, who knows, we'll take it one day at a time, right?
I am actually surprised I feel so lousy today, as yesterday I fell asleep at around noon, and didnt wake up until 7PM!! I stayed up for a while and went back to sleep around 11PM and slept right through the alarm!! I would think with that much rest I would feel OK today, but I just dont. I actually feel like I could sleep now until tomorrow again!! Must be Sat catching up...
I hope everyone is doing ok today....Cheryl, how is your jaw, honey? Are you able to chew anything yet? I better be able to soon, because this ice cream is sure to put more weight on me - lol!!
Oh yeah, at my docs last week, I was 145lb and today Im 150!! I think its the swelling though....thats alot of weight for one week, and Ive had NO appetite, so Ive been eating less...who knows....I look VERY ROUND though...my Dad said I look so cute...like a little butterball!! (oh God, Dad, that is NOT a compliment!!!)
Hope everyone is feeling flare-free!!
Love Lauri

cheryl_v

07-29-2008, 06:55 AM

Hi Lauri, gotta love those docs. Just always act as if no big deal, or as if never noticed. Could weather be why you feel so lousy? I know that happens to me, and the high or low pressue that comes with it. Some weather I'm ok, some I can't move very well. Maybe, just my opinion, your body wasn't ready for saturday with the problem of missed doses. The meds hadn't kicked in enough, so feeling harder than usual. Either way I hope it gets better. If you like I can sneak up behind you and pop you with a needle to relieve pressure :lol: . I'll be quick, and run like the wind so you don't poke me back, :lol: . Have a good day :D .

KathyW1958

07-29-2008, 10:25 AM

Hi Lauri,
I hope that you get to feeling better. If you have to go on Imuran. You should not have to many problems with it. I have been on Imuran for 12 years or so and it is helping me a lot. I hope that the swelling goes down.

Kathy

laurid8967

07-29-2008, 10:51 AM

Hey guys,
Thanks for the replies...Kathy, you have said that before about Imuran and I was so happy to hear that. When I looked up patient symptoms (theres a website where people write in about their symptoms on specific meds) and most everyone there had gotten sick a little, and lost their hair. As I said before, one day at a time...I may not even have to go on it, you know? I am getting a really puffy belly from the prednisone though (unless its part of the other swelling) and I do - for sure - have a ROUND face...so maybe getting off the steroids would be good. My doctor was a little evasive yesterday..not evasive..indifferent maybe...IDK..could be me..He wasnt AT ALL concerned witht the swelling, and I think this is why: I have a REALLY small frame..small ankles, wrists, etc...and when I get swollen, its kind of hard to tell. My hubby can tell right away. When Im not swollen, my feet are really bony (very unattractive feet) and when Im swollen, you cannot see ANY bones whatsoever. The same with my ankles, wrists, etc. So when Im swollen, my ankles look like normal ankles...But, its not even the swelling that bothers me, its the sensations I get when I am swollen. I feel as if there is an elastic half way up my thighs, and that the circulation is cut off from that point down...Its really tingly (constant tingling feeling) and sore to touch on the inside of my legs all the way up the inside. It also feels really TIGHT and hard to the touch. All the joints are hard to bend, but its not my joiints that are swollen. But to bend my foot up hurts, to bend my knee hurts - but its the pressure from the swelling...does this make any sense? Does anyone know what this is? Id be really curious to any suggestions. I dont know if I should blow it off or not. The other thing that concerns me, is when I get this swelling, Im REALLY fatigued and really spacey-lightheaded and have bad floaters infront of my eyes...
Any suggestions?
Love Lauri